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Author
Topic: er lets call it convelesing (Read 10545 times)

Its been a particularly poorly week. Two big medical appointments have been attended to. While in Hospital a cat Scan revealed that my spleen had grown since the last time it posed and quite a few off my lymph nodes where swollen, however no biopsies as all indications regarding infection showed that I was clearing all active infection. Yesterday I saw for the first time my new GP , who assumed from my discharge report that my Hodgkin had return, I said that was not the conclusion off the HIV/oncology team.

Today I met with my HIV doctor off 15 + years , and it is agreed that the swollen lymph nodes need to be kept an eye on especially as I still feel very unwell. I meet with him in 4 weeks time and am encouraged to contact him in the meantime , a Scan will occur after that meeting if my health and bloods indicate its needed.

In the meantime I am crunching morphine sulphate and that gets me off the sofa for a couple off hours a day .

As those off you who know I write these sum up,s so that firstly I am clear about whats going on , else it can just seem like blundering from one medical environment to the other.

Hopefully the tone will gain some more glitter in the coming weeks.

A word off heart felt thanks to friends who are walking Mia , dealing with mind shattering idiotic bureaucracy totally stripped off any empathetic input , and putting up with groans.

Later as the babies say , futurama as I reply to there general confusion.Michael

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

No temp today eaten 3 small meals ,reading Margery Allingham short stories , arm still part immobilized by vaccine shot , tinnitus and eye pain right down so more comfort than I have had this week . Would like my Batman to run a bath and prepare all the pills,powder, hot chocolate , warm the towels , pyjamas and dressing gown , prepare hot water bottle but he is away at the annual convention off imaginary servants.

Weather is very wet and uninviting forecast is more tomorrow entertained with thunder and lightning this afternoon , used less morph today . Would love to get out off the flat and walk the dog , illness is very very boring..

mod to add Happy Birthday Mr Wump.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Michael, I'm glad you were able to eat without having a dreaded fever. I hope you continue to improve. If I were there, I would draw you a nice hot bath. In fact, if you had two tubs, I would also draw myself a hot bath and we could gossip while soaking!

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Michael, I'm glad you were able to eat without having a dreaded fever. I hope you continue to improve. If I were there, I would draw you a nice hot bath. In fact, if you had two tubs, I would also draw myself a hot bath and we could gossip while soaking!

Michael, I'm glad you were able to eat without having a dreaded fever. I hope you continue to improve. If I were there, I would draw you a nice hot bath. In fact, if you had two tubs, I would also draw myself a hot bath and we could gossip while soaking!

Oh lovely

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

After a couple off days without temp I spent yesterday dosing one , and again dealing with the eye ache. On top off that a visit from my landlords surveyor went arse up ,with me up setting a good friend into the general mix , who had done a lot off work on my behalf with the landlords.

I cannot cope with anything when I have even the slightest temp, my brain goes to mush and I am extremely emotional and thin skinned. Mostly I am able to use this knowledge and take steps to avoid, delay anything required off me. But some days you cannot take aversion action and bingo a mess.

This am the temp is back dosed down now , spoken to the clinic if it contines I am to contact. Its OK if I can just keep myself to myself , my danger points are dealing with bureaucracy , all Patient goes and in no time I am feeling persecuted by them ,what was inefficient becomes a personal attack .

Then it brings up the fact that the problem would not exist if I had the money to pay for work myself.

This is what I did when I had the money , it got the jobs done and the council/landlord out . This action has come back to bite as it has been said by the council that I had never requested certain repairs , its hard to make them realize that was because every penny spent was worth it as it kept there special brand off madness away.

A bit off a rant , but it is not a straight forward time and to ensure damage limitation I am keeping self to self , opinion lock down.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

I would just like to record that today I got out, shopped,picked up drugs, spent a pleasent hour chatting on Skype , have had NO physical complaints all day. None , I am now going to join my dog on the Sofa , read drink Tea eat chocolate. I thank you.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

I would just like to record that today I got out, shopped,picked up drugs, spent a pleasent hour chatting on Skype , have had NO physical complaints all day. None , I am now going to join my dog on the Sofa , read drink Tea eat chocolate. I thank you.

I am overcome with rapture as I approach my first week of no physical illness since September , as I said to a friend evan feeling tired when well is nicer. Tomorrow I go for full bloods that my HIV doc and I will meet and discuss the last week off Feb .

And , if the weather Gods allow, I will get to travel to the Lake District on Friday without being Pilled to the Gills on my famous how to travel when ill with out arrest combo .

Pip-Pipm

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

I met with my HIV Doc to evaluate the past two months blood work and there is no need to mount any further investigations into the return off the dreaded Hodgkin. I was dancing for Joy inside though as I was having day 2 off very bone bruised feet I just jiggled from the waist up.

Emotionally its not surprising I guess that the past two days saw a return to exhausted sleeping, I had also had a good run ,nearly 4 weeks without it and had returned from the Lake district and generally had been , for me pretty actice .

What the blood work also showed was that my testosterone collapsed during the hospital stay and had not recovered , so due to the osteoporosis I opted for the 3 month depo injection.

This is somewhat off a challenge for the terminally buttockly challenged and I appreciated Jody<s skill and assurance which made the procedure as good as it could be .

Due to our Governments manic interference with all things health I now have to have the other injections at my GP,s , and unless the Orkney Doc is prepared to have the cost off it out of there budject it means getting back to London at the beginning off June.

But it would be churlish to concentrate on that . I do no have a recurrence off the Hodgkin and I am one very relieved old aids fart with a very sore right buttock.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

During the Hospital stay a referral was made for me to be an in patient at a Hospice 5 mins from the London Flat. I had been an in patient there during and after the last Hodkin,s treatment , Anyway I was too healthy , for the inpatients but not for the day patients and the assessment interview was on Friday.

Outcome , I start Physiotherapy This coming Tuesday . Can have access to a range off complementary doings which I will take up in the Autumn as I want the summer in Orkney.

What I had confirmed for myself is that this is where I can get services that I got 8 years plus ago on the grounds off having an AIDS defining episode. These are no longer but I can access good services through the Cancer route. So UK folks in similar situation please note.

The Hospice is a delightful place , very much a part off Clapham , hopefully my link below will work.

There is no doubt about it I am having a wobbly. After a good month last Monday the feet/body pain came on with a vengeance and I have spent the week on the sofa. Most off the pain gone but the ball off my right foot never ease,s up and I have accepted that there is never now time without pain, I am just able to deal with at times better.

The fact that it is never going to go has to be accepted but its bought me low.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Problem off the week is dental. Gums are very sore , dentist yesterday and tomorrow. The day patient thing at the Hospice is slightly overwhelming as they are being so pro-active . So I now have 6 weeks off physio aimed at maintaining/increasing balance, reflexology, and next week meeting with a volunteer who will help with the never ending project off decorating.

Completed the form all UK folk who are receiving disability benefit are having to do , I loath any form to do with HIV and have over the years created merry ding dong with them. Am glad to say have matured enough to have found a system that works now for me and gets them done, this one is a record as its only 6 months late.

However today is the Ist anniversary off my Mothers death .And that has dominated all,The sense off time flying by is not at the moment comfortable , cannot quite articulate why I feel disturbed but disturbed I am. In a very quite reflective way , not mumbling in the street way. At the moment there is too much loss. Off loved ones and the life I thought I would have . Hey-hom

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Thanks Betty , its also Mothers Day this weekend in the UK and I do find many things poignant about it.As the single sibling my role was to spend it with her if she was not travelling to stay with Brother and Sister , which due to 10 years off ill health before her death was enough for it to be a pattern for me .But the disturbance has settled and I feel OK and pleased that I completed ,for me , a very busy active week.

The Dental work is too advanced for my dentist and she has referred me back to the Hospital .The sore month is due to minute tooth moments ,rubbing gums and I now have a pain relieving mouth wash and gel and pastels to create saliva .

My physiotherapists is excellent and is researching through her network a comprehensive foot care clinic. I do get benefit from her manipulation though at times it is unbearable then delightfull. The end result is more flexible ankle,s and feet. Next week I have the first reflexology and group physio sessions.

I hope you are enjoying the MOD role and your own recovery is tip top.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

At last I can add something positive.The reflexology and physiotherapy have helped beyond the very pleasant experience off having them.I am having less fluid build up at the end off the day at sock elastic rim, and the feet do not fell like blocks off concrete , this wears off before the next appointment but its the first sign off improvement for a very long time . Pip- PIP for sure.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

At last I can add something positive.The reflexology and physiotherapy have helped beyond the very pleasant experience off having them.I am having less fluid build up at the end off the day at sock elastic rim, and the feet do not fell like blocks off concrete , this wears off before the next appointment but its the first sign off improvement for a very long time . Pip- PIP for sure.

That's great, Michael! So, the reflexology helps quite a bit? I've never had it done, but it does sound interesting. I hope you continue to improve.

My recovery is going well. Still can't lift anything heavy (at least not that I can tell anyone lol). See the surgeon on the 15th, hopefully he'll release me from any restrictions.

I am Finger wagging you Missy , no can,t keep it up giggling instead .

Thanks for the feedback Mitch and Betty , I think I will keep this thread going for ever as the title I like very much , it sums up the past 10 years and convalescing is nicer than fucked or crap more Jane Austin than Irving Walsh. I had the first group gym session this week . I was on my best behaviour but I do not know how I will resist showing the darker side off what amuses me with a room full off people with serious Cancers doing a work out.

All is crossed for the 15 Betty dear , just walk into the room singing ' Please release me let me go..........For I,ve no gold to pay your bill ........

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

I lifted tiny handweights that usually come in Pink. They must be hugely expensive as the metal was so dense making them surprisingly heavy. I had 3 differing ways to lift them.I walk on springy foam between parallel bars stop with one foot directly in front of the other touching and remain stationary.I bicycle on a machine and think about advanced societies ability to create objects like a stationary bicycle.I try to remain upright and still on a big inflated plastic/rubber pimple/I sit, strap leg weights around my ankles and then lift legs and hold the lift for 10 secs. The leg weights are made from the same dense material as the pink things.I place a large inflated beach ball between the small off my back and the wall ,bend my knees until I am swatting ,rise. Repeat.When i have completed a task I tick it off on my personal exercise list.Each off us do one off these exercises for 90 seconds , stop , move on to the next and start again for 90 seconds .Two sets.Stretching warm up /cool down movements beginning and end off sessionThe big boys played on a rowing machine , and a small trampoline , Miss said she would see when I could.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Sounds all very similar to what I just finished doing for 2.5 months of physical therapy.

I enjoyed it and I think you did also , what I think was skilled is that although I slept until 1 pm then again till 6pm I do not have any aches or pains like I usually do after a bout off physical activity above the norm, sanding for decorating say, which has had me groaning the next day.

Well paced by the physio,s . Hopefully I will be awake tomorrow.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Its mid day and I still have to eat dress etc. I have had yet another sleep a thon 24 hours and am feeling disturbed. Have to take this to the Doc. I am working towards going to pick up drugs at the clinic. While I am there I will get bloods done and book an appointment to discuss it.

Am Low at the moment , very low.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

8pm . Got to the Hospital , two vials off blood +urine sample see my Doc on Thurs, which I am most impressed by , then depressed by as I realize that with 8000 people attending the clinic you have to be a real old grizzled aidsie to get such lovely quick treatment. I have earned it as there has not been a time I have been there with out really really needing it.

Entire time out felt that I could collapse at any time, on the bus a middle aged lady suddenly became a Jack-in-the-box so quickly did she leap out off the disabled seat for a grateful me , the Taxi driver who concluded the journey home offered assistance too, so I conclude I looked as good as I felt.

However as is often the case with me I feel better in the evening , lunch was good at Carluccio,s wild mushroom & smoked Bacon soup + fancy breads and a Choc bread and current pudding with vanilla sauce , espresso double and I was fast asleep one hour after it, think I am immune to caffeine.

See what tomorrow brings.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

"Windows" of feeling better? Is there any rhyme or reason you know of? Is it the meds maybe?

I am not speaking for Theyer but allot of us long timers that suffered extensive damage from HIV have our good days and bad days or even moments . I can sometime work harder than most people I know only to find myself in bed for days or weeks at other times .

I am not speaking for Theyer but allot of us long timers that suffered extensive damage from HIV have our good days and bad days or even moments . I can sometime work harder than most people I know only to find myself in bed for days or weeks at other times .

We treat what we can and live with the rest best we can .

What sort of damage may I ask? Don't mean to be nosey... just curious. The HIV itself or the treatment?